Saturday, May 29, 2010

Pray for Carter

A friend just shared this blog with me and I wanted to pass it on. There is an amazing little boy named Carter who will most likely be going to heaven tomorrow. Please read their story and pray for this tough little guy and his family. Their faith and attitude should serve as inspiration to us all.

Saturday, May 1, 2010

A little bit of catch-up

So, it's been a super-long time since I've done a kiddo update, and as I am currently sitting in my room having some quiet time and reminding myself that I do, in fact, adore my children, despite their current incessant whining and orneriness... if orneriness is even a word.

I think I'll do bullets today... I'm feeling lazy. I blame it on the rain.

We'll start with Dax :)

  • 23lbs 2oz and 32" tall at his last doctor's appointment!
  • He's TWO now!
  • Pulmonology has us weaning off of his O2 at night. We're allowing his O2 sats to drop to the low 90s since that's actually good for the holes in his heart, and it doesn't appear to be causing any problems with his pulmonary hypertension. Yay! So he still wears the O2 at night, it's just turned down to a ridiculously low little half-puff of a tad bit of an eensy amount of extra air. :)
  • We have surgery scheduled in June to replace his tubes in his ears since one has worked its way out, and that ear has already accumulated fluid again. I called all our specialists to see if anyone wanted to piggyback any procedures since Dax would already be sedated and intubated and... they all said NO. Wow.
  • Still allowing Dax to outgrow his dosage of Viagra... He's just a slow grower and it's taking a while.
  • We've been trialing out bolus feeds instead of continuous feeds with the g-tube, and Dax's appetite has really picked up during the day. We're trying to increase his fluid and caloric intake and are still trying to figure out the how much-es and whens.
  • Our most recent swallow study showed he is still aspirating on thins, so we'll keep on thickening his liquids. His most recent laryngoscopy showed his left vocal chord is still paralyzed, and will therefore likely remain that way, and that is probably a huge contributor to his inability to handle thins. Hopefully he'll learn to compensate over the next few years.
  • We've actually started trying some intro to potty training to build tee-tee and poop awareness, since Dax has pretty much no awareness of discomfort at all. We've been having Dax sit on his potty after his bolus feeds and flushes when we know he'll have to go, and then making a big fuss about his success. I will go into details about that in a different post, which will include fun details like how he feels the need to pull his wiener out and point it at things while he's sitting on his potty and how he thinks putting toys and food in the potty while he is sitting on it is a fantastic idea.
  • Since we're starting the potty, I picked up some big boy underwear the other day. Turns out they were a fantastic purchase! In addition to them making Dax look like a miniature Calvin Klein model, he can wear them over his diapers to make a nice place to tuck in g-tube extension tubing when we leave it attached between bolus feeds and flushes. I love it when a plan comes together!
  • Still not walking, but he's up to 5 or 6 steps at a time and is standing for longer periods without holding on to things. His PT has ordered a reverse gait trainer assistive device for him, but stated, for the record, that she "knows he will start walking the day it comes in." That's my boy :)
  • We're about to start on a new journey, and it's pretty scary for me but I think/hope it will be the best thing to do for Dax in the long run. Since we're out of RSV season now, we're about to start outpatient PT, OT, Speech, and swallow therapies. He's only been getting PT for months now, since there are just no pediatric ST or OT home health therapists in this area. During the winter I felt the benefits of outpatient were outweighed by the risks, but I want to really push him now, at least until next RSV season, and I'm hoping the increased therapies will help.
  • In addition, we also have Dax and TyTy both on the list for a blended early intervention preschool. Again, we're out of RSV season and Dax needs the socialization, as does Ty, but it's pretty terrifying for me. Luckily, I know the ladies who work at this preschool and they're amazing, and I know both my kiddos will be in good hands. I think my biggest fear is Dax getting into a peer's juice and aspirating in addition to my usual fears of germs... But I know him being around other kids is important now, too... So I'm letting him go, and I know it's what's best... And everything will be okay. Right... Right?!
  • We did the March for Babies a few weeks ago and ran into several of our old friends and met some special moms I had been wanting to meet forever. Our team raised over $1800 :) I hear it was the biggest March for Babies ever in the state of Tennessee... I'm so glad we were a part of it, and so thankful for everyone who marched for Dax, Aubrie, and Kins!

    And finally, Dax is currently recovering from our scariest incident since he left the NICU in 2008. I woke up Friday morning and could hear him breathing. When I went into his room, he was sitting up and awake, and was hyperventilating. He sounded like he'd just run up a tall hill, and he kept burping from all the air he was swallowing. I checked his sats and they were okay, but not great, and I called the nurse to see what she thought we should do. I ended up giving him an extra puff off his inhaler and started beating his back to loosen up what I could hear and feel rattling in his lungs. He was warm, so I did an ancillary temp and it was 100.1... Which isn't that high, I don't guess, except this is the first fever he has run AT ALL since he was in cardiac failure at 6 months old. At any rate, the nurse arrived and listened to his lungs which she said were definitely wet, and I called the doctor. She let us go ahead and dose him with Lasix so we could see how he reacted, and thankfully he had improvements with the first dose. By 10AM his breathing was back to his normal pattern, and he was able to start coughing up some of the junk that had settled into his lungs. By the afternoon his fever was down and everything was pretty much working its way back to normal. I am so extremely thankful that we were able to remedy it quickly... I had to dose him with Lasix again today since he's still a little wet, and I'll play tomorrow by ear, but he is definitely feeling more like himself. And I am almost back to normal, too. Almost.
And now on to TyTy:

  • Dax's "little" brother also weighs in at 23 lbs.
  • Ty, who once wore his brother's hand-me-downs, is now re-hand-me-down-ing the clothes back to his brother.
  • He's now got his 2 bottom teeth, and if I don't kill him first, he should be cutting in 2 more bottom teeth any day now. I think he'll look a lot like Lola the bulldog with his 4 bottom teeth and no top teeth.
  • He's decided that his "big" brother is the coolest person on the face of the Earth, and as long as he can see Dax and do what he's doing, life is good.
  • Oh, unless Dax is playing drums on his head. Still not a big fan of that.
  • TyTy is crawling everywhere and pulling up on everything. He has not yet mastered the art of sitting down once he's pulled up, though, so about 3-5 minutes after he stands he cries until you sit him back down. Hopefully he will soon learn how to plop down on that big fat hiney of his.
  • He turned 9 months old yesterday, and wears pretty much exclusively 18-month clothes now. We're currently searching for "Richard Simmon's Sweating to the Nursery Rhymes."
  • He's saying "Dada," "Mama,", "Nana," "dog," and "Ty" pretty much whenever he wants to, and pretty much never when I want him to.
  • He's working on tee-tee awareness along with his brother, since Tag-a-long TyTy was determined to be right by Dax during potty time, anyway. Oddly enough, Ty usually tee-tee's faster than his brother once he's on the potty, and is the first of the two to poop in the potty. Although, I guess that's not too awfully odd, since Ty poops, on average, about 42 times a day, while Dax's plumbing runs considerably slower....
  • Ty loves Oreos. Actually, "Oreo addict" might be a more appropriate term. He would snort, inhale, and inject them if he knew how. Must be genetics; maybe he can go to Oreoholics Anonymous meetings with his Ma Mills.

I think that's the highlights for now, and duty is calling, so I best be off... I'll upload a few more pictures soon!

Love you guys, hope you're doing well, and I'm glad to be back!